Sunday, May 19, 2013

My blog-world turned real-life friend, Angie, is down from Alaska right now at Seattle Children's hospital. Her five-year-old daughter, Natalie just had her Fontan Thursday morning. The girl is doing the really, really hard work of recovery and praise God, already moving to the floor later today.

Having gone through two open-heart surgeries with our son, I have an idea of what Angie and her family is going through right now. More of an idea than a lot of people.

But I can't know know.

It wasn't until after Luke's two surgeries in his first year that I entered bloggy land and started meeting moms and dads around the country who could relate to the emotions and fears I felt. Then I joined Mended Little Hearts and met even more moms and dads who got it. We connected on that "I get it" level. They knew what it was like to battle to get your kid to gain ounces. To be in the hospital day after day and just want to steal your baby out of there. We smiled at each other when we pulled out the Purell bottle at the same time.

Yes, they could relate. But even they couldn't know know.

I struggled with this for a long time. Feeling alone because no one "got it". Feeling resentful that even if I shared until I was blue in the face, my friends couldn't fully understand. I wanted them to and even, for a while, pulled back from friendships because they just couldn't. And I have wonderful friends. Friends who called and texted and brought meals and prayed and visited.

It took me coming up from air after Luke's intense first year and a half for God to get through to me with this most valuable, precious lesson. One that I cling to when those feelings of frustration bubble up:

There's actually a name for God in the Bible that portrays this aspect of His character. We often hear the term "omniscient" used to characterize God, which is true and good, but that word can make God seem far away, watching over everything and everyone from a distance.

That's why I've fallen in love with the name used by Hagar, in the midst of her despair as she runs away from Abraham and Sarah in Genesis 16:13. El Roi, the God who sees me.

Connecting with other heart families has been a tremendous gift in my life. The conversations are rich and encouraging. But if I am dependent on people to meet the need to be seen and know, I am going to be sorely disappointed. I can encourage Angie today as she sits with her daughter in the hospital. I can pray for her and Natalie and someday, I am going to be in her place, with Luke in the CICU. But I can't know every thought and emotion she's feeling or see every tear that falls.

What I pray most for her and me and all my heart family friends is that in those dark times of anguish, that we would fall into the truth that God is right there, never slumbering or looking away. How that's possible I have no idea, but I trust it. And I need it. We all have a God-given need to be known. God wouldn't give us that desire if He couldn't fill it.

Luke's neighbor friend asked me the other day why Luke sometimes wanted a piggy-back up our huge neighborhood hill. Luke is so typical in so many ways, he hadn't even remembered about Luke's heart defect. In traditional fashion, my first emotion was sadness that Luke is different and that even my neighbors have no clue as to the severity of his defect and history.

This blog post had been spinning around my brain for a while now, and God used it to bring me back to what's true. His knowing is enough.

Tuesday, May 14, 2013

My email pinged with a notification from BabyCenter.com. It was the last newsletter of my baby's "babyhood". I have told Laney multiple times over the past weeks that she is, under no uncertain terms, not allowed to turn two.

She is being one disobedient little girl.

Because Friday is coming very fast. The girl can make me laugh, she can captivate me; she can jump and talk and run; she can make me crazy and she can bring overwhelming joy, but she can't stop time any more than I can.

So, with or without my approval, this girl is turning two on Friday.

She has brought our family such healing these past two years. She may never know the gift she is to our home, but I will spend her life trying to help her understand her worth.

In celebration of her, we put on a "Purple Party" for her Friday night (or, "Poo-poo party" in her words. I can't tell you how many times Luke would ask Laney to say that, then roll in laughter).

(I didn't laugh at all. I would never encourage potty humor.)

My sister, her husband, and their sweet little Pritchett flew up for the weekend, so Luke and Laney got some cousin time.

Poor guy.

And poor guys. The tiaras had to be worn:

Laney-bug, I can't believe you're two. Do you know how prayed for you were? And are? God handmade you to be the perfect completion of our family. You bring smiles to all three of us every single day.

When you say, "Ahhh, doggone it", we smile.

When you sing with abandon into your microphone, we smile.

When you ask me where Bubby is, even just a few minutes after we've dropped him off at school, I smile.

You are such a blend of shy and outgoing; complacent and feisty. I love that you don't let your Bubby walk all over you. Because he can be a boss! You have no trouble telling him no, or stop, or don't.

You are my little chatterbox, hardly stopping to take a breath most days. You love to know where everyone is, and what everyone is doing. "What are you doing, Daddy?" Your curiosity will serve you well!

You are my little morning buddy, running errands with me, getting Starbucks together, going to the gym or for a run. Next year, when Luke is in full-day school, we will have most of the day together. And just think, almost a full day of playing with your toys how you want to! I am so thankful for my work schedule that allows me to spend all that time with you. I know your school years will come quickly.

You are my flexible child. You transition well, and even though you would prefer to stay with mom or dad, you go with other caregivers really well. Maybe one or two tears at the beginning, but then you adjust quickly. You go willingly into the church and gym nurseries, and you absolutely love your two half days a week at Nonna's house. She has so much for you to do down there: Worm hunting, tea parties, gardening, painting, trampoline-jumping, and lots and lots of jewelry.

Every other Wednesday, you spend the morning with your friend Leighton, who is just 5 weeks younger than you. For the most part, you girls play great together and with her dark hair and your blond, you two are the cutest pair on the block.

I love that you love your sleep. You sleep 11-12 hours each night, taking a 1.5-2 hour nap each afternoon. Usually, you wake up singing, although lately, you are calling out, "Momma! I have to go pee-pee!" Yes, you are out of diapers. This was unplanned and completely shocking to me, but after you asked to go to the toilet a couple of times, I figured I better run with it. There are even a lot of mornings that your pull-up is dry from overnight.

In tops and bottoms, you wear a size 2T and I am guessing you weigh about 27 or 28 pounds. You still carry your baby fat and I am nowhere near ready for that to go away. I could eat you up my sweet daughter.

We couldn't love you more, Laney. Your heart is beautiful and I pray every day it would grow to love Jesus as your best friend. I think back to when I was pregnant with you. Whatever I pictured you to be was not even close to who you are.

About Us

Roger and Jesse welcomed Lukas Scott into our lives in January of 2007. He came into this world with only one ventricle, but with incalculable lessons to teach those who love him. This blog is intended to keep family and friends updated on Luke's journey, and in the hopes of passing on the encouragement, joy and deeper understanding of God's love we receive by knowing Luke.